Monday and I wake up aware that I did not return to the blog yesterday. My grandson had been taken home as his cough was worsening so wise parents had taken him home to keep him in his familiar environment. So we had waved them good bye mid Sunday afternoon loaded with food and good wishes. As a result we had the evening to ourselves, in which we discovered Red Eye and will doubtless continue to binge watch it later today. After a long lay and doing my vital, (all good), I got up for breakfast and reoriented for a grandsonless Bank Holiday Monday. I noticed that the temporary overflow that I had rigged up while the builder bunnies do their thing, had come apart again. Despite the sunshine my weather app said it was going to rain latter in the day so I needed to do something about it.

In this situation there is only one thing to do and that is to do the thing properly so I take my partner to the local Wickes to buy three lengths of standard 68 millimeter down pipe and a couple of straight joints. Fortunately I can get the pipes into my car. Back home I set to work with the help of my partner to put in a proper temporary down pipe. After some experimentation with support for the pipes and cutting one to drain length the task gets completed. We cannot open the rear patio doors but it is only temporary inconvenience.

Having packed away the tools I am very hot and sweaty so take to the recliner to rest. I’ve clearly over reached myself for the moment and take time to recover. Its a beautiful day outside but I do not have the energy to go out in it. The nap I have does not last long and then I am back on the laptop to see if there is a reply from the American publishers. There is and they have reduced the price of my publishing to something I can manage so I accept their offer. I then set about checking the materials to go and find that I have mislaid a USB stick so have to copy the final poem off the website and then rejig some bits of the materials. I am still not feeling that chipper and so continue to try and rest. I pop out of the room for a pee and the Americans ring me so miss the call, clearly they do not do May Bank Holiday. I am not in a rush so I update the blog before checking the email they say they have sent me. My cousin in Scotland has sent an email saying that they have received my video letter and encouraged me to ask them anything about the family if it will help to build the family tree.

I shall reply to the Americans and send them the Zip files today before I settle into the evening. I note the promised late afternoon showers have not materialised, perhaps the night will be different and my down pipe will prove its worth. For now its rest and recovery leading to night meds and hopefully a peaceful night.

Sunday and I seem to have had a good night. It appears that, at least initially, I am pain free. My partner is awake and has brought us warm drinks, she no longer needs to ask what, its always hot water. We chat for a while and then my partner gets up and reappears with our grandson. Of course there is then a prolonged bout of play and engagement with the young man as he curiously explores the world, us and of course his socks. He is of course the most delightful child, smiley and “chatty”, who seems to have a lovely temperament.

My grandson goes off to breakfast and I do my vitals, which are normal again, before I join the rest of the family for breakfast. With the meal cleared away my partner and youngest daughter go off to do some clothes shopping for the small person and when they are away my grandson goes for a short walk with me and his dad around the village. He naps briefly but when returning home he is awake again. My eldest daughter and I take turns at entertaining him until his mum returns home to give him lunch. The poor mite has a bit of a cough but he seems to be well within himself. I take some pictures of my garden. There are many displaced pots due to the landscaping work that is being carried out and some of the pots are flowering for the first time, notably a pot of my grandfathers iris that I had moved to the front of the house last years. There are daisies as well that always make me smile and make me feel happy.

With the return of he shopping duo the happy little boy is fed lunch as I start the blog for the day.

Its five thirty on Saturday morning and I am up. My symptoms of disruption to my urine flow have sneaked up on me again. no blood but soreness. I did not drink much yesterday so I am up early and on to my second hot water of the day in no time. I’ve taken my meds with three biscuits and had an early co-codamol to stave off pain, I’m desperate to be okay for the arrival of my grandson and his parents later this morning. I do what I always do when I get into a corner, I write. This is not a pretty poem or an easy one, or one to lift the spirits, but its how I am at five thirty in the morning when not doing okay and that is what this blog was and is intended for. No one needs to ask how I am or ask the awkward questions.

386
I am trying really hard
not to be a nuisance,
endeavouring not to add
to the general pain. 
Every way I turn those I love
are battling oceans of storms. 
It is as if the world
has filled its self with illness
without cure or palliative care.
I really am trying
but its hard to deny my decline,
those subtle, sore signs
that things are getting worse.
My head weaves benign explanations,
makes up logical explanations 
for this and that 
ache and ague,
each difficulty and soreness,
but deep down I know 
I’m on a slippery slope.
I tell myself that this is 
a negative mind set, 
that I am making things worse,
that being chipper and up beat
would help, but I know it’s not true.
I’ve either been or being ground 
fine in the grindstones of my disease
and finally, it’s found its way 
to bring me down. 
I really am trying 
to be brave and not cause a fuss,
I’d just like a hug,
but so would everyone else 
in the midst of their travails.
It’s a busy world of pain 
And there is no time 
to stop, just rest when opportunity arises
and then start all over again.
I realise we are all trying hard
and the silence of my loved ones
is a different kind of unbearable,
a mute gagging on the expected 
loss and perception of the ebbing
flow from those they love. 
I’m trying really hard 
in my way to carry on,
but the mirrors I look into 
show me failure, decline and 
worst of all the aloneness.
No one else but me can do this,
this standing, looking over
the landscape of my life 
and putting away my feelings
knowing there is not enough 
care or love to take away or slay 
this singularity.
I am trying really hard
not to be a miserable old git,
the downer in every one’s day,
the grandfather and father 
who is no fun anymore,
just the old guy who has to be asked,
“are you okay”?
I miss being loved,
I miss the no strings attached affection,
the delight in me,
like some immortal,
an everlasting thing of joy.
A shiny object with a future 
and more fun to come.
The Real World swallows us whole
and love becomes duty,
obligation and a chore, 
a world devoid of its core.
Is this depression,
is this the manifestation 
of some chemical imbalance 
or is this life in its later form?
I do not know 
but I’m trying really hard.
Trying really hard to be okay,
to ignore my longings and to 
get on. 
To that end I’ll take the drugs
and hope at least the pain subsides 
long enough to give another hug.
I’m trying really hard.
Perhaps my next collection will be called
“Self Pitying Bastard” 
I think I’m trying really hard,
perhaps I’m not;
not hard enough.																		
                                                                                                                        386 04-05-2024

By seven thirty I’ve blogged just as a way to keep me occupied while the drugs kick in, my partner is up and showered and making toast, now the day starts in earnest and I need to get going to be ready for my grandson to arrive. It is all hands to the psychological pumps.

Post toast I am struggling and although I manage a shower I’m not functioning well. Although I’m not experiencing haematuria I am in some discomfort as I frequently visit the bathroom. This is how I am when my youngest daughter , her partner and my grandson arrive late morning. He is a delight and is gurgling and smiling happily all the way to lunch time, when we all make sandwiches and indulge in cake. I help to clear away and load the dishwasher while the family prepare to go for a walk in Bradgate park. They drive off and I settle down to rest and watch some football and rugby noting that my symptoms are decreasing in frequency if I stay reclined and quiet. This is how my afternoon goes.

The family return and dinner is prepared, the grandson fed and prepared for bed and then the family eat. I cannot face it, I just want to rest really, but eat I must and spend the evening with my family. I make the effort knowing there is co-codamol to fall back on. Its what I do, having watched a film with the family I take my night meds, finish the blog and take yet more co-codamol, vowing that if I am not improving tomorrow it will be time to call 111 again. What all this does do is prompt me to email the Americans to begin to haggle over the price of my next two collections. I’m very tired.

Friday and it starts with my partner thrown into the need to go to see her mother with her brother as her mother has had a fall in the night and the paramedics are in attendance. My partner goes off to deal with the situation. I take my vitals and then get up to make breakfast. The builder badgers have arrived and already are laying bricks on the new patio. They are given coffee and encouraged in their work. I clear the kitchen and then go to take my morning meds to find my wallet empty, when I check my spare one is as well so its time to do my fortnightly drug load up. Its a boring thing to be doing but its one of those tasks that forms the structures that help me stay on track and in control of the things I can keep control of.

Once I have filled my wallets I take my morning meds and get on with things, which includes giving the builder badgers another coffee. My partner returns from her mothers and there is time for a quick chat before we go off to the local garden centre to buy food for the weekend and our family visitors. The shopping goes well and so we stop off at our favourite coffee house at the next garden centre down the road. It gives us time to sit and talk through where we are with coping with all the stuff that is going on. It seems there is a lot of heavy lifting to be done in the future and we need to find ways to have time to recover and to replenish ourselves as we do the lifting.

By the time we get home the builder badgers have gone and before we can squirrel the shopping away the first part invoice for the badgers work arrives in my in box. I pay it by BACS and send the head badger a text to tell him the moneys gone, to which he promptly replies that the payment has gone through. My partner goes for a rest and I clear up some chores and tidy away things. I join my partner and take the opportunity to try out the new blood pressure cuff that has been delivered. Its a large size one that makes taking my blood pressure easier. With a successful test of the cuff I have a nap and when I wake I go on getting the house ready for our youngest daughter visit tomorrow. Everywhere I turn my friends and family appear to be struggling with weaving the mundane work and family stuff with ongoing extraordinary distressing demands. No one I know seems to be living lives of serene satisfaction, perhaps its just my age or the times we live in or my particular view of the world. In my small way I try to keep with them all.

When my partner

Thursday and after a reasonable nights sleep I take my time getting up, taking my vitals before I actually do. The readings are good and are normal. Once up I clear he kitchen and make myself one of my favourite breakfast of fried egg sandwich and coffee. The builder badgers are well under way and spend all day brick laying, it is in marked contrast to the literal heavy lifting and clearing they did yesterday. There is a lot of meticulous brick alignment going on and careful consideration going on. By the end of the day the patio has acquired its shape and the walls are growing. Within the brickwork is woven the trunking for the lighting that is being incorporated. Apart from providing coffee these badgers are very self sufficient.

I settle into my sofa office and set about recording more video letters. Its quite a slow process as I find appropriate conversation and try to produce some sort of appropriate flow. Some are easier than others but I try not to pause the recording. I would rather create a shorter letter than struggle to fid things to say. So my day is filled with spoken word as I talk watching myself on the screen, it is a strange process. I try to imagine the person in front of me and therefore create a conversational tone. When I play them back I am appalled by how often I Um and Ah and use certain fill in words. Part of the problem is needing to produce all the content without having someone to provide feedback or any conversational content. It makes me realise how brilliant Alastair Cook was when he recorded his Letters from America. He did have the advantage of having to produce fifteen minutes on a topic of his choosing but nevertheless it was a master class in verbal letter making.

By mid afternoon I have completed all the letters that I intend to record. There is all the envelopes and insert notes to do which takes a while and then I take a trip to the Post Office. I have seven small packets to send and I see the post folk sag as they realise I shall want all my packets sent to be signed for. We get the business done and I by a paper and some treats and return home to do todays crosswords. I am on form and soon whizz thorough the crosswords in time for tea. Its tuna pasta night as my partner will be doing her singing her lesson. As for me I am hoping to watch some football tonight and then have another early night to continue resting in anticipation of the visit by our new grandson at the weekend. So another mundane day where I have tried to rest. It makes me uneasy to be this passive but I am trusting there will be a pay off at the weekend.

Wednesday and I wake fitfully after a terrible nights sleep, I saw every hour and made at least two attempts to sleep on the lounge sofa. By the time I got out of bed my partner had gone to work and the builder badgers were under way. Breakfast is simple and taken quickly before I make the badgers a start the day coffee. My spoon reserves are very low so I make the decision to do very little today beyond recording video letters. I make a list and start my letters keeping an eye on the badgers digging up the front garden and moving the rubble from the back garden. As the morning goes on the spoil heap grows as the badgers get to work.

By the end of the afternoon I have made four video letters but I can’t get out of the drive to post them. At about five o’clock the promised big digger lorry arrives and in no time at all the drive is clear, its been an amazing effort by the builder badgers today.

Before I realise my partner is home , the builder badgers have packed up and left I have re-taped the improvised down pipe in the back garden. While my partner settles in before cooking tea I change all the bulbs in the bathroom to new LED lights. The effort uses up a lot of spoons and I return to the sofa to rest and dine. I am flagging already so I watch part of a film and Race across the world as I try to finish off the blog. There is nothing from the Americans yet, I guess it is going to be a while before they start to chase the money and get in contact again. I am hoping to get my night meds down me and have an early night and a better nights sleep than last night, I just want to be as good as possible for the visit of the grandson this weekend. I’ve noticed that over the years the period of time that my monthly jab affects has grown. Its definitely taking me longer to recover, it seems this combination of drugs is playing havoc with my gut so I am not keen on food too much.

It’s Tuesday and I am up early to move the cars off the drive before the builder badgers arrive sharp at 8 o’clock. When they do arrive I make them coffee and they get underway. and I have breakfast. I once again work on my poetry collections all morning punctuated by an expected call from a friend. Its a brief call as we catch up before she goes to work, just as she concludes the call the “new bin” delivery man arrives and gives us a replacement garden waste bin and takes the old damaged one away. I settle back to my editing poetry. I find it difficult to keep focus and I am aware that my injection site is sore and I am not feeling at my best. By late morning I am out of spoons already and decide to take a break from the laptop.

My to do list has some chores on it so I set off to change a spot light in the bathroom but cannot find my bag of replacement bulbs, I get ratty as my frustration gets the better of me. I give up the search and just order more from Amazon before having lunch. Snooker is my TV wallpaper as I start todays blog. I have an email from the Americans telling me my books are now on more platforms so I check. It turns out that I am on Amazon, IngramSpark, Kobo, Goodreads, Waterstones, and Barnes and Noble. I notice that none of the platforms have any reviews and are asking people to be the first to review the books. So if there is anyone out there who would like to write a brief review then please feel free to do so. It gets to 2 o’clock and the builder badgers move their van in anticipation of Tesco delivering over the next hour, I watch eagerly for the delivery while composing my next email to the Americans.

Tesco arrive and I do the weekly squirreling and then return to composing my email to the Americans. I am interested in the offer of an audio version of one of the books but I have reservations about the suitability of some of the material. I am suggesting that perhaps an audio book should be a later development when more material has been published. I have two more collections ready to go and invite the Americans to make an offer. Having sent the email I go to take my vitals. They turn out to be good and while I read afterwards I fall asleep. By the time I wake the builder badgers have left and I have missed a phone call from a friend and my partner had returned from work.

The evening starts with food and an email from the Americans with an offer. Its an offer I will not take up unless they drop the price. There is a meal and some chores to do as tomorrow is bin collection day and the day the builder badgers are saying they are bringing in big lorries to clear away all the debris that they have created so the decks are cleared and they are able to get on actually constructing things. One film later I am back sorting out the blog and then its time to take my night meds and get myself to bed. The early morning caused by the builders is taking its toll.

Jab Monday so I am up early to get showered and to move the cars off the drive so the builder badges can get going at 8 o’clock. So I manage to squeeze in toast and a coffee before the badgers need a chat about some construction details. Apparently they have order a “big grabber” to clear the rubbish pile that is becoming mountainous in the front garden. So by the time I set off for the GP surgery for my jab I have been quite busy.

I get to the surgery and log in and realise that I am not feeling that good. Fortunately I am called in early and the usual nurse gets to work with the same patter as always. The actual injection is okay. Once over I book the next one and a set of bloods before my next oncology review that is coming up. I get out of the surgery and head for the local co-op and buy bread and a paper on my way home.

On getting home I make a drink and take some paracetamol to stave off the aftermath of the injection while I do todays crosswords. I settle in on the recliner and start to work on the next poetry collections that I want to get underway with the Americans. I take it as auspicious that it appears that my very first royalties have appeared in my bank account. This is how I spend the rest of the day. I proof read two collections and write the acknowledgement, contents and dedications. By the time the early evening arrives I am done, I also have a garden full of bricks. At the mid afternoon a huge builders materials lorry rocks up and unloads bags and blocks of bricks. Our badgers are certainly cracking on.

As I start to draft the blog the after effects of the morning jab is kicking in. I can feel my injection site becoming sore and I am feeling less well and my attention is flagging. So my evening is going to be one in which I finalise tomorrows Tesco delivery and then head for bed as early as possible to try and get a good nights sleep. The biggest decision, paracetamol or co-codamol?

Saturday seems a while ago now as it was a day of chores, sport and poems. I knew as I woke up that it was going to be a slow day, thee are days when I know that I am going to be low on energy spoons. So I do my vitals and get up for breakfast. and then potter around puttering for a while. My partner and eldest daughter go off to see the Amy Whinehouse film and I get my washing on the go adn settle down to an afternoon of TV sport. Part way through the afternoon am moved to write a poem and take time out to do that. There is work to do on the next two collections but that must wait until next week. Clearly the sport did not hold my attention as I end up reading the meters and submitting the readings before once again returning to the sport.

Although I am not doing much I can feel my energy seep away but still get my washing dried and put away by the time the evening comes around. There is a meal to eat and films to eat and eventually meds to take. This was a thoroughly sedentary day with little brain feeding going on. It makes for a boring blog but at times this is how it is, just trying to keep myself safe. It is the theme of the poem that I wrote in the morning.

385
It’s a new lifestyle,
drive there,
sit there,
drive back. 
Its containment 
of this wicked disease. 
Life has become a series
of short episodes of entertainment 
and contact beyond the family.
Each trip holds risks
but the harvest is a feast
of food for the brain 
as life stops being physical 
and becomes cerebral. 
Once a month I wrap myself 
in poets.
Their words and reading
the best of food,
the discussion the sweetest source.
It is this dining 
that fattens me 
and sees me through 
the lean times. 
In between courses  
friends send me books
so my feet up recoveries 
are picknicks, sometimes snacks. 
This is how I out wait
the waiting lists, 
the endless English queuing
politely understanding the pressures
and the fact that everyone 
is trying their best.
So here I lay  
browsing and grazing
hankering after a rowing machine
and clear urine 
to reassure me 
that I can stretch 
the survival 
curve. 

								385 27-04-2024

 

Sunday start is a reminder that drinking coffee keeps me awake at night. I got up several times in the night unable to sleep and listened to the incessant rain. I was tempted once or twice to see if my improvised down pipe was holding up but resisted the temptation trusting to the my creativity and the power of gaffer tape. I did eventually get a block of sleep during which I know I dreamt fitfully. My partner makes hot drinks and we chat about plans for the day. I get up and have breakfast whilst recording my weight, which has flattened out around 101 kilos. This increase in weight is a major frustration adn caused by my not training. Until the I can get my bladder stone sorted and I can excise without experiencing haematuria (blood in the urine) my weight is going to be a battle. That of course is compounded by my sweet tooth.

My partner and I go to the garden centre to buy food for the rest of the weekend and until Tesco deliver on Tuesday. Its a quick go and come back trip, before I catch up with the blog and some more sport. It lunch and onwards for me as I continue to plan more collections of poems and find time to read.

I slip into the evening with a meal and then an evening of TV before drafting the blog. My final acts of this slothful day is to take my night meds and a prophylactic co-codalmol. It is my monthly jab at the GP surgery tomorrow at 9am so I am going to be busy with making sure the drive is clear for the builder badgers when they arrive at 8am. I am hoping that an early night will see me right.

Friday and I’m up early to move cars but not before taking my vitals that are all good. The builder badgers also arrive early and are at it very quickly with the intention of laying the new foundation brick works to the new patio today. That’s what I call efficient. After yesterday’s continued dismantling and grubbing our of hedges it feels has if things are moving rapidly. Our mounds of rubble are ever growing but the grand plan is to have huge front garden pyramid and then bring two twenty ton lorries with grabbers to shift all the debris from back and front in one go. All I can do is make them coffee and biscuits and cheer them on.

So by nine thirty I am breakfasted, my partner has been to the GP, I’ve started the blog and the sun is shining. I cross my fingers and hope for a good day, I’ve been fooled before, it would be nice for this one to go okay. My partner returns from the GP with a paper which I pounce upon and do the crosswords. My to do list needs to up dated which I do and then head off out to pick up my monthly drugs from the chemist. Having picked up my pharma I walk the length of the village back to the post office where I send my driving licence renewal off. Back home I start the blog for the day.

There are a few things to do, like mend one of the shoe racks that had sprung apart. It feels like I’ve been busy by the time I get to check the progress of the video letters I had sent earlier in the week. To my surprise the one to Nairn had arrived but the ones to York and locally, Stafford had yet to arrive. I am beginning to no trust the mail system. It used to be that first class mail would reliably arrive the next day, but this is clearly no longer true. I take some time to help me eldest daughter sort out an appointment with a specialist to assess her torn ankle tendon. With that done I take the opportunity to refill the bird feeders and the squirrel feeder. I peek inside the hedgehog box but nothing is in residence apart from a large slug. As a last morning thing to do I book a couple of night out at events being put on by our local venue, the De Montfort Hall. It is keeping with the life style that is developing due to my current symptoms, namely, drive somewhere, sit and be entertained and either stay over night or drive home. It’s a sort of dash out, be quiet and dash back in again, like some sort of timid creature surviving in a dangerous environment.

My partner finishes work at lunch time and we go off to our favourite garden centre café for a late lunch. On retuning home we find the builder badges have gone home, ( a set , presumably), and it has started to rain and there is more in the forecast. On checking how the water but system has been left I find the done pipe has been left open, which means if its left it will flood out onto the newly laid foundation brickwork. I therefore dash around improvising a run off hose from the roof down pipe. Below is a picture of my bodging, but it does explain why I ask for gaffer tape every Christmas and birthday.

It remains to be seen if my construction works, but on the safe side I have ordered three types of waterproof sealant to arrive over the weekend. So I expect at some point I will be spraying, painting and daubing sealant all over my handiwork. Overall the builder badgers have cracked on and made good progress, so I expect we will see them again on Monday.

Of course there is a price to pay for all this activity. When I go for a piss after all this activity I piss blood, not significant amounts but enough to be identifiable. Nothing for it but to get my feet up and rest and drink a load of water for the evening. If it goes right then over the next hours I will recover and go back to normal, but nothing is guaranteed. So tonight is set for TV and keeping myself warm and hydrated till I down my evening meds and probably a co-codamol. So in essence I have slipped into preservation mode until I have got back to some sort of normal. And so it goes.